Difficult conversations: End-of-life decisions
Mr. Ralph Wells is a fifty-five year old man with hypertension and advancing kidney disease. He suffered a cardiovascular accident (CVA) which resulted in him being unconscious, unable to move, incontinent and with no ability to communicate. Shortly after admission to the hospital, Mr. Wells' wife brought in his green sleeve containing his advance care planning (ACP) document, his goals of care designation (GCD) as well as a personal directive. The personal directive listed Mrs. Wells as the alternate decision maker.
Four weeks later, Mr. Wells developed pneumonia. At this point, his children insisted that all possible measures to prolong his life be taken. However, his wife asserted that their father would not wish to lengthen his life under these circumstances and reminded the children of the previous discussions that Mr. Wells has had with the family about a palliative approach to his care as well as the ACP and GCD documents that were completed.
Factors to take into account when considering palliative and end-of-life care
Palliative and end-of-life care is both a philosophy and an approach to care that enables all individuals with a life-limiting and/or life-threatening condition to receive integrated and coordinated care across the continuum. Palliative care focuses on managing symptoms through the prevention and relief of suffering. A palliative approach to care takes the principles of palliative and end-of-life care and applies them to the care of people with chronic, life-limiting conditions by meeting their full range of physical, psychosocial and spiritual needs at all stages of life, not just the end of life.
The goals of palliative and end-of-life care are to:
- provide person-centered care
- care for and support the family
- improve the quality of life and death for the person
- provide comfort
- maintain the person’s dignity
The roles of registered nurses
Registered nurses (RNs) are often well-positioned to take on a leadership role in facilitating the coordination and implementation of palliative and end-of-life care services. The Canadian Nurses Association (CNA) Code of Ethics for Registered Nurses (2017) states that:
“When a person receiving care is terminally ill or dying, nurses foster comfort, alleviate suffering, advocate for adequate relief of discomfort and pain, and assist people in meeting their goals of culturally and spiritually appropriate care. This includes providing a palliative approach to care for the people they interact with across the lifespan and the continuum of care, support for the family during and following the death, and care of the person’s body after death.” (p. 13)
As the direct providers of care, RNs play a vital role in facilitating communication between clients, families, caregivers and the greater health-care team.
CARNA’s position statement Palliative and End-Of-Life Care outlines principles that are fundamental to palliative care. The role of the RN in palliative and end-of-life care is also described in this document. Some of the roles outlined indicate that the RN:
- aims to maintain and improve quality of life through efforts to alleviate physical, emotional, psychological and spiritual suffering
- advocates for and involves the person and family in health care decision-making (CNA, 2017)
- applies a unique body of evidence-informed knowledge, skill and experience to provide individualized and effective palliative and end-of-life care. This includes understanding the difference between and educating clients and family members about ACP, GCD and personal directives
What are ACP, GCD and personal directives?
ACP is an ongoing process of reflection, communication and documentation regarding a person’s values and wishes for future health and personal care in the event they become incapable of consenting to or refusing treatment or other care. Conversations to inform health-care providers, family and friends — and especially an alternate decision-maker — are regularly reviewed and updated. Such conversations often clarify wishes for future care and options for their end of life. Attention must also be paid to provincial legal and health-care guidelines.
A GCD is a medical order by a physician or nurse practitioner which describes and communicates general care intentions, specific clinically indicated health interventions, transfer decisions, and locations of care for a client as established after consultation between the most responsible health practitioner and client or alternate decision-maker.
A personal directive is like a living will, which outlines end-of-life wishes, but it’s broader. A personal directive can be about all health-care decisions, where the individual lives, the activities they take part in, etc. The individual chooses one or more person(s) they trust to make personal decisions for them if, in the future, they can’t make them because of illness or injury. The person(s) chosen to make the decisions is called the agent. A personal directive should be written when the individual is able to make their own decisions and will come “in effect” when they are no longer able to make decisions for themselves.
RNs should consider starting discussions with the client who has a life-limiting and/or life-threatening illness about palliative care concepts early in their care. In these discussions, it may be appropriate to include information about personal directives and alternate decision-making in health care.
Often there are important and difficult decisions to be made about health-care treatment so conversations between family, friends and health-care providers about ACP are essential.
Mr. Ralph Wells' situation
Mr. Wells' current medical prognosis is poor and pneumonia has developed. The health-care team will need to work together with the family to follow the client’s wishes as they are outlined in the ACP and GCD documents. Compassionate palliative care includes recognition of the family’s need for time and support, as they each work through a changing relationship with someone they love.
In Mr. Wells' situation, the family became involved in grief and family counselling, and pastoral care services, as well as numerous discussions with the health-care professionals caring for the client. Mr. Wells died several days later in apparent comfort, with his family at his side. Counselling for the family continues following his death.
Disclaimer: Our case studies are fictional educational resources. While we strive to make the scenarios as realistic as possible, any resemblance to actual people or events is coincidental.